With two grandchildren that have cystic fibrosis and a son spearheading awareness on a local level, Tina and Monte Frisbee spoke Thursday at the Ridgecrest Exchange Club on the topic from a different level.

"We're here to present it from a grandparent's view," Tina Frisbee said.

Monte Frisbee said he had heard about the disease much the same way as the other people, when loved ones like his two granddaughters — Taylor and Isabella — were diagnosed.

"I had no clue what it was, and of course we had to get involved," Monte said.

Cystic Fibrosis is a chronic disease that affects the lungs and pancreas, and fills the body up with a thick, sticky mucus. There are at least 1,800 known mutations of the disease.

The Frisbees said that treatment for the disease has improved since 1940. The life expectancy for at least half those diagnosed is 37 years of age, up from 6 months in 1940.

They said their grandchildren were diagnosed in 2007, when Isabella was an infant and Taylor was 3 years old.

"They found out when they tried to figure out what was wrong with the little one," Tina said. "It wasn't until after the baby was born that they tested Taylor as well."

Their older grandson, Trevor, does not have cystic fibrosis, but is a carrier. Monte explained that one in 80 people are carriers. The risk of children being born with the disease increases to one in four if both parents are carriers.

Monte said he and Tina found out when "the call came (from the parents) and said they (Isabella and Taylor) both have it."’

Treatment consists of a vibrating vest that helps break up the mucus in the body. The therapy is usually twice a day for 20 to 30 minutes a session.

Both grandchildren go through the treatments, but other than that, she stressed they are as normal as other kids, with homework and peer pressure.

Tina said that over the last decade improvements have been made for testing for the disease at infancy in all 50 states.

“It really is an advantage with this new infant testing program, and we can see it in the difference of our two grandchildren,” Tina said.

Tina added that there is a drug, funded by the effort from the Cystic Fibrosis Foundation and developed by another company called Kalydeco that helps manage the symptoms — for only 4 percent. The drug was approved in 2012.

Another organization, Stanford-based Cystic Fibrosis Research, Inc., does research and education programs, as well as support families.

The Frisbees said that their son and daughter-in-law, Eric and Julie Frisbee, began acting on a local level to raise awareness.

The Ridgecrest “Great Strides for Cystic Fibrosis” fundraising effort has netted $201,602 between 2007 and 2012. Around $12,156 alone came from the schools raising funds.

Page 2 of 2 - Tina and Monte both said that their son is using his skills as an engineer to help find solutions for raising awareness.

In addition, neighbors and friends of the Frisbees have been involved, including Felice McLane and Linda Klabunde.

Making strides

Another part of the Ridgecrest “Great Strides for Cystic Fibrosis” is the annual 5k Walk that begins at Cerro Coso College's field track. This year's event is Saturday, Dec. 7 at 10 a.m., with registration at 9:30 a.m. An additional 5k run is also scheduled at the same time, sponsored by CrossFit and The Over the Hill Club.

“This was so important for Eric and Julie to do, because they got to see that people in this community care,” Tina said.

McLane, one of the local advocates for raising awareness, said her involvement “was the one thing I wanted to do.”

She said she has quit other things over time, with the exception of helping with her husband's music scholarship.

“The Frisbees are a wonderful family and they have been here a long time,” McLane said. “I especially admire Julie and Eric and how they are raising their girls to be self-sufficient while also trying to have as normal a life as possible.”

She added that Trevor, Taylor and Isabella's older brother, is “very protective” of the girls.

McClane said that the walk was very important, especially for those with cystic fibrosis.

“Running and walking is one of the most important things that patients can do, because it helps clear the lungs,” McClain said. “The lung is the most vulnerable part of the body because of all the mucus, so walking and running is very exemplary, as it depicts the fight or the struggle.”

Burroughs High School is engaged, especially the football team and AVID students, something McLane said was a powerful idea.

“They are really on fire about getting some creative fundraising going,” McClane said.

For more information, to donate or register for the walk, people can visit www.ericfrisbee.com/walk.